Am very appreciative of all the communications and information on this site. I developed PMR as a result of the shingles(zostavax) vaccine given at the same time as the flu vaccine even though I had two contraindications for administering zostavax. I am 80 years old ( Nice specifies not suitable for this age group) and I have an autoimmune condition- oral lichen planus and Merk the makers of zostavax say PMR is a potential adverse side effect. Since I pointed this out to my GP the policy has since been changed. Too late for me! I started at 15 mg prednisolone in January down to 12.5 then 10 mg and since early May been slowly tapering by 1mg every six weeks - tomorrow I will be on 6 mg. Have had all the horrendous side effects- insomnia, mood swings as well as the external effects moon face, buffalo hump, losing hair off my head, growing on my face etc. Dread to think what’s happening inside. I still have some pain in my arms but manageable. Will continue to reduce at this rate in the hope that I can come off the prednisolone as I hate the side effects so much. Wondering how bad these are on very low dose rate and whether the adrenal glands kick in to produce cortisol at low rates? Good to offload to a community that understands the trials and tribulations of it all. Thanks.
Shingles Zostavax injection : Am very appreciative... - PMRGCAuk
Shingles Zostavax injection
Once you get below 5mg the side effects of Pred should be minimal, but I would impress upon you no matter how much you dislike Pred if your illness needs a certain level then it needs that level. Plus it may
well last s lot longer than your doctor may tell you, or you may want.
You are at the level where your Adrenals should start to work again - but no-one can say exactly when.
You might like to have s look at this - healthunlocked.com/pmrgcauk...
Thank you just beginning to realise I don’t know enough about PMR and prednisolone. But am listening and learning. Thanks
Welcome to the forum! It is indeed a very supportive place. It is interesting about the vaccine and the contraindications. I used to give it when I was blissfully unaware of what PMR and GCA really were. I’m pretty sure the info we were given in the local policy and in the box’s leaflet didn’t mention PMR, though I have since seen it in other documents about the vaccine. It was all very simplified and made to sound reassuring. As nurses we worried because we were fully accountable but with pressure to err on the side of giving vaccines and some docs were unbelievably cavalier if I flagged up someone I felt might come to harm but didn’t fall into the contraindication categories.
Anyway, I do understand you hating Pred but taking things slowly needs to be done precisely because you hate it. If you keep reducing even though you have symptoms, you risk the inflammation building up to such a level that you need to go up again, possibly a lot higher. You are probably like me, very sensitive to Pred, but nothing induced me to rush it because it thought, “never again”. You worry about what is going on inside of you from the Pred but increasing inflammation is insidious and could bring a worse outcome such as GCA and high doses make 15mg seem trivial. Reducing isn’t to get off it, though you may well do in time, it is to find the lowest dose that holds the inflammation until your body decides to stop attacking itself which usually takes at least 2 years, but often you can be on super low doses. Yes, the side effects do reduce with dose but my experience is that the side effects of now (apart from obvious short term ones) are not due to the dose of now, but the dose of some time before. The reason I think this is that I’ve been on from at least as low 0.5mg since before last Christmas and now I’m on practically nothing. It is only in the last few months that it feels like Pred has mostly left me. When I was on higher but still low doses I remember wondering why I still had so many side effects, but then they just got better; it felt like a delayed effect. So, what I’m saying is, try not to reduce so fast, as you may find the side effects reduce anyway.
Another thing to think about is your adrenal function. Yes, the adrenal glands should make up the lack of cortisol when the pills no longer deliver enough. However, it is common that this process of switching back on isn’t seamless and so you need to tempt them back into action, not just pull them out of bed and tell them that they are now in charge. We talk about the adrenals when we actually mean the whole process of making cortisol which starts in the brain so any part of that process can be affected. Again, time and patience is key. When I got to just below 8mg I started to feel worse again with fatigue, mood swings and a total inability to cope with anything, something others have noted too. This was adrenal insufficiency and felt like a low blow having got through the high doses. So, just be aware that it may not be the Pred now.
Sit tight for more replies!
Thank you Snazzy D. Very helpful. The reduction in dose at 1 mg every 6 weeks was my GP’s instruction -pain in arms isn’t constant some days am o.k depends on activity. Do you think this reduction rate too rapid? Was so looking forward to reducing tomorrow and I have noticed that discomfort increases for a week after reduction till the body adjusts. Grateful for your advice.
Right, withdrawal tends to kick within a day or two and sticks around for usually up to a week. So, if it carries on, suspect PMR. However, I found low adrenal symptoms included vague aches and pains, even more so than withdrawal sometimes. This carried on throughout but died away with better adrenal function. I didn’t have PMR but I gather PMR pain is quite specific.
Personally I couldn’t cope with more than 0.5mg per 6-8 weeks but you are you, so do what you feel is right as long as you are honest with yourself about how the PMR is and if you getting symptoms of adrenal insufficiency, slow down because your body isn’t quite up to it yet. In the grand scheme of things a week or two on a dose to level out and settle isn’t going to break the bank. Docs give a program of reduction because you have to start somewhere. The good ones recognise that one size doesn’t fit all as with all of medicine and the bad ones blame the patient if they can’t conform to the piece of paper. Be aware of symptoms of adrenal crisis so you can recognise it as it can creep on slowly or hit you as a result of your body not being able to cope with a physical challenge which can come in all sorts of shapes and sizes.
mayoclinic.org/diseases-con...
Glad of your advice and wondering whether 0.5 mg tablets exist or do you just cut the 1mg? Thank you.
Either cut a 5mg to get 2.5mg and make up with 1mg tablets or cut a 1mg tablet but they do tend to be a bit fiddly I gather.
I have 2.5mg. and 1mg. At present taking 4.5mg, plan to go to 4 with the 1mg. and so on. I will eventually cut 1mg in two, I hope. Good Luck !
Discomfort that comes on early after a reduction and resolves over 7-10 days is withdrawal. Discomfort that comes along later, either as slowly building or "a-train-ran-over-me" sudden onset, is a flare. Sit out withdrawal. Jump on a flare with an increased dose until you feel better, give it a few days, then g.o back to the last dose where you felt comfortable. Let everything settle for a couple of weeks before trying to reduce again.
At this point, you might want to slow your reduction using one of the DSNS methods, or by reducing your daily dose by 0.5 mg until you get to 5mg. The six weeks pattern seems to be working for you. Then do the DSNS program. We suffer less when we don't cut dosage by more than 10% at a time, and DSNS helps with that as doses diminish. There are a number of different patterns that people have used successfully, but most of them involve taking a higher dose for a number of days in a week, reducing to a lower dose for a number of days that week, and gradually increasing the number of days at the lower dose until you've hit the same dose for all 7 days of a week. To succeed, you need to be willing to take a step back promptly if your symptoms begin to reappear.
Be sure to monitor your activity levels and err on the side of less doing, more rest end of the spectrum. Better to take a nice walk on days when you're feeling good, pausing to sit on a bench and watch the squirrels, than to chase the dust bunnies around the house. The dust bunnies my Roomba can't reach have names. I congratulate myself on their proliferation and view them as friends applauding my forebearance in giving myself a setback.
At these levels, the cosmetic side effects begin to disappear, but you may feel more fatigued as you wait for your adrenals to produce more pred. Give yourself permission to take a sit down or a nap whenever you need to, and keep this in mind if you intend to drive. You need to watch your footing, and be attentive when using tools, sharp objects, hot pots etc. This is not the time to be tempting accidents and injuries. The moonface diminishes, the hump goes, the pred belly shrinks. You can help this along by eliminating salts and lowering carbohydrates, eliminating those without nutritional value. You'll be doing yourself a favor is everything you eat is nutritionally dense.
Expect that you may need some low dose - typically under 5mg - for some time to come. Think in terms of years, and don't stress about it. Our adrenals typically keep a cortisol level at about 7.5mg, produce more when stressed by activity or illness, and it's going to be a while before they resume their complete function. Some people never do have a complete resumption, and therefore need a low dose of pred for life. For others, a low dose keeps PMR under control, but it never truly goes into complete remission. Bear in mind that poorly controlled inflammation is far worse for your body than low pred doses.
You've done very well so far. Keep being mindful and proceed with caution. When the journey is long, the tortoise beats the hare.
What is the DSNS method? Thanks
healthunlocked.com/pmrgcauk...
It is a way of smoothing the step down in a reduction so your body notices it less
DSNS - Dead Slow Nearly Stop tapering plan.
Here's a link:
I found your post so positive ! im fairly new oh here and have had some wonderful advice, this post really struck home for me ! When i was told i had PMR first time around after not going to the Drs for weeks ,thinking what ever it was would just go away ! Well it didnt and the first pred i took was like a miracle! pain free in hours ! My Dr gave me a rough guide to reduce so i went from 20mgs to zero in just under 6 months . Cured fantastic how easy was that, until it came roaring back almost 2 months ago .Twice as bad and twice as painful. Im now in going through a number of tests etc and waiting for results of a CT scan which i get this week. Im on 40mgs of Pred and having a bad time with it . Side affects for me are horrendous Sweating flushing , fluid , weight gain ,moon face to name a few. I am desperate to start lowering the dose having been on it for for a month . Im just so nervous of getting it wrong. I have a good Dr but i really dont feel she has a true grasp about the reduce regime !I know feel like you and others have said ,maybe i will have to stay on a very low dose for a long time . Just want to be free of pain and most of all return to a normal life looking like a normal human being .Thank you for this , im sure you have helped many others that are floundering ! With my very best wishes Viv x
I too developed PMR from the shingles vaccine. I have had PMR for two years now. I am down to 1mg if pred but still have lots of stiffness. My blood markers are good so I am going to keep going and see what happens, I would never had got the shingles vaccine if the Doctor had not called me and told me to have it. More in her walker. This is the killer I just got over shingles. Very lucky as I caught it on time so got the medication and just had a mild dose.
Me too. I am on 6.5mg after 5 years at Christmas. Very sensitive so dropping ultra slowly 🙄😵
I do appreciate you want off pred - but it does sound as if you are already at a bit too low a dose for your own good. If you are and keep reducing you could end up back where you were to start with and that means doing it all over again from a higher dose than you are at now.
I gained weight with one sort of steroid but when I put my mind to it and cut carbs drastically so I lost the weight the buffalo hump and other pred fat deposits melted away and now I'm just overweight instead of Cushingoid. Some of the things attributed to being on pred also happen when you have PMR that isn't treated - insomnia, mood swings, weight gain and hair loss. But most things with pred can be mitigated when you know how - ask, someone will have a suggestion.
Snazzy has said it all!
Since being on 7mg am beginning to recognise myself in the mirror a vanity thing and of less importance than pain and am only now beginning to understand the complexity of PMR and prednisolone. Am considering what to do next - increase dose or Reduce by 0.5 every 6 weeks.
If I were you I'd stick where you for a few weeks - just to see how things go and maybe the odd pains you are feeling will improve. Is it just in your arms? Are you carrying shopping bags or hauling a vacuum cleaner around? Our muscles remain intolerant of certain activities because of the effects of PMR and the pred - some changes in habits may help. A shopping trolley or a splitting unloading the car can make a big difference to sore arms!
Good advice. Will stay on 7mg for a while. Yes I sometimes do use the vac or swab floors. So will see how it goes.
I can't spend more than 5-10 minutes using the vacuum or mop - if it doesn't get my back, it gets my arms!
Have managed to stay the same weight while on prednisolone but nevertheless had the fat deposits (reducing). Am listening to all the good advice and hope to have a more sensible approach to reducing dosage. I realise that as an 80 year old female I have been lucky in arriving at this age with very few health concerns and I feel for the ones that develop this condition at an earlier age. Many thanks.
I am a solid supporter of vaccination, but here's a reminder to always ask whether the proposed vaccine is a live vaccine, and to ask for an alternative, even if the "dead" vaccine requires more than one shot for efficacy.
We all have an autoimmune condition, and none of us should be getting a live vaccine for anything unless the threat of the infection is so great as to be life-threatening.
Ask every single time you are getting a vaccination, and if the person administering the vaccine doesn't know the answer to a certainty, tell them to find someone who knows, or decline the shot until you can get an authoritative answer.
Trouble with the shingles vaccine has been there was only Zostavax, The new one is not yet universally available except privately at IRO £450 in the UK.
This includes the flu vaccine, as that time arrives in the U.K. ask for the unactivated one?
Yup.
I understand. Here in the US, we often have to pay out of pocket for tests, services, imaging, vaccines and pharmaceuticals not covered by Medicare, Medicaid or private insurance. For many of us, it accumulates to thousands of dollars per year on top of Medicare premiums ($150 per month) plus private insurance premiums ($hundreds of dollars per month depending on the state and the level of coverage, and whether the desired provider is available in your coverage network/area). It has become evident that even those with good, comrehensive insurance are left with more that a $100,000 in medical bills for weeks of COVID treatment in the ICU, not to mention subsequent physical and respiratory therapy. That by itself should be motivation for wearing face masks and observing social distancing.
I pay over $1000/year in copayments for rheumy visits, tests, imaging and prescriptions just for my PMR, in addition to $1800 for Medicare premiums and $5000/year for private insurance.
And I'm one of the "lucky" ones.
😱 Good grief, GOOD_GRIEF!! I’d be on the streets if I had to pay out all that.
It's about the same as many people's state pension in the UK ... Eat or get medical treatment ...
Yes, the same in Australia. I’m very grateful for the system here. Have recently had cataract ops, op for fractured tibia and fibula rt leg, ankle and fibula fracture left leg, PMR treatment, GP visits, pathology tests - cost $0.00. There is a small cost for pred tablets - no complaints about that.
We have small co-pays here if you have less than a certain household income and various illnesses provide an exemption for anything to do with that. If you have cancer of any sort that immediately triggers a total exemption from the co-pays. But at least we never have to worry whether our insurance covers x, y or z. Which having had a couple of years of sleepless nights not knowing how I would be covered for healthcare if Brexit happened before I was entitled to a pension here I am very very grateful for that! It was 60 for women when we first came here, rose overnight to 65 the same as men and then crept up to 67! But I have caught up at last!
Yes, the age pension rose similarly here.
For us Europeans that is unbelievable!
However, when you add up the monthly payments for the health systems (anything from €400-€700 per month) I suppose it's comparable (somewhat)!!😏
I too live in the US and have Medicare and private insurance. I pay no co-payments, minimal payment for 10 prescribed medications and am fortunate to have a pharmaceutical company fund my biologic prescribed for my GCA. I can go to any doctor I want, when I want and any hospital I want. I have Access-a-ride to drive me to doctor's visits. Yes, private insurance is expensive but worth every penny. I am blessed. Checked with my husband. Medicare is less than $130 month taken out of our S.S. payments. It is my primary insurance. My secondary private insurance is about $2,800 year...top coverage It picks up and pays everything that Medicare doesn't. Prescription insurance is $30 month. I do not pay co pays for any tests, images, etc. There are many other plans available, some with little cost, but have co-pays.
Luciejc, I too am in the US and on medicare and pay for the Supplemental insurance which fortunately isn't too awful. Before I hit 66 and had to pay for insurance through our business, we were paying $2,000 monthly each for my husband and myself, so $4,000 a month for both of us. What we pay now is much less and pneumonia and flu shots are covered as well as my prednisone, so I feel blessed as well. Thank you for the information about the shingles shot. I will hold off on that one.
My GCA was triggered by the second Shingrix Shingles Injection.
Interesting - some experts were wondering about how people with deranged immune systems might react, despite the assurances that it would be better for us.
Has it been reported as an adverse effect using the post launch reporting system? That is how they find the REAL adverse effects in normal day to day use rather than when used for healthy volunteers in the clinical trials.
I am now very wary of all vaccinations having developed PMR after having Zostavax vaccine .
I am also and did not take the flu shot last year rght after being diagnosed with GCA. I will probably not get one this year and not the COVID when it becomes available.
Yes, very hard to keep up with expenses of health problems inspite of having Medicare and top of the line supplement. 😏
I had the Shingles vaccine in 2013. I developed PMR in 2018 so no connection there. I reduced from the starting dose of 15mg of Prednisilone daily to 7mg in 10 months but, 15 months later, I am still on 4mg daily. Finding it difficult to reduce more, even gradually, but am not too concerned as am fairly happy to be on under 5mg.
Thank you for that. Think I am reconciled to the fact that prednisolone is going to be a part of my life for far longer than I first envisaged - but hey pain free would be good.
That's the reason why getting a nutritious diet under way and engaging in exercise routines that stress range of motion, maintaining strength and stamina are important. And you need to recognize, accept and accommodate the fact that you have a chronic condition, and your body requires periods of deep rest on a daily basis. Small, steady progress on these fronts leads to permanent lifestyle changes that avoid the injuries to which we become prone, avoids complications, as well as improves our overall health. You can't take root in the rocking chair, but you also have to accept that you're already running a type of marathon, which is all about conditioning, preserving form and energy for the tough stuff, and not giving in to frustration and despair.
Ask for help when you need it. People who care about you may never really "get it", but they really do want to help and have no idea how. Give them the opportunity to help. They'll feel better about themselves, and you'll have more energy for being with them.
Develop an appreciation for the quiet things in life, and find something beautiful (birds singing in the neighborhood, a cloud formation) , something funny (I personally enjoy the daily squirrel circus, and watching my husband struggle with his cowlick)), and something kind to do for someone else every day (even if it's just a smile and a heartfelt gracious "thank you"). Make yourself aware that life is good even when we don't feel well.
Oh, and if you can manage it, get a Roomba. It's really fun watching something else do the work, even if your dust bunny collection under the bed remains.
Totally agree. Had a lovely gentle walk this morning and found some wild gentian flowers. Simple pleasures. Am also trying to meditate to help with the acceptance of my condition. I have been so angry with my surgery for giving me this life changing illness and this anger was only hurting me. Acceptance and forgiveness is difficult though but am trying.
The last "thing" can be quite random - and if it hadn't been that it would very likely be something else soon after. It may have been the shingles shot - but you could have developed shingles and that triggered the PMR. I know - it is a major thing to get your head round but I do hope you succeed. Can you change your doctor? At present every time you have contact with them it is poking the would.
I developed PMR after Zostavax as well. Have had it going on 9 years. Currently at 5mg and any lower drives me in to deep shoulder leg and neck pain. Of course my pharmacy lost the record of the shot. Would like to join the lawsuit against Merk.
This disease has wasted my once strong muscles and changed my lifestyle forever.
That is a long time to be suffering so I understand your feelings against Merk. Hope the 5mg dose keeps you pain free.
Merck should be investigated , too many people suffering a possible life time disease. Certainly a life changing illness .
As one who was advised by medics to reduce quickly, that fed into my urge to be rid of pred., please take it slowly. I have had numerous flares which are definitely not good news and just means it all goes on longer. I am nearing the lowest dose I have ever reached after 8yrs. Lost the moon face, hair loss from head, but could still do a good beard and moustache. have tried to maintain walking, reasonable diet etc. Still have mood swings but may be predisposed!! Tortoise, not hare.
Welcome Watercolorist! Sorry you have a need to join the forum but the information and support here is wonderful. I was anxious to get off prednisone and went from 20 mg in October 2019 to 7 mg by June 2020 which I didn't think was too fast. Unfortunately I didn't listen to my body when it was trying to tell me to hold at 7.5 mg for longer than a month and had to go back to 15 mg. to get my flare under control so the advise you are receiving about taking it slow is very good advice.
I, too, had my 2nd shingles shot and a flu shot at the same time a year ago. Shortly after that I was diagnosed with PMR. Prednisone gave immediate relief. I started at 10 mg and am now down to 3 mg. I'm 80. I do have continuing pain here and there, especially in right hip and right lower back. But my pain is manageable, which leads me to wonder whether this is really PMR or a combination of arthritis and fibromyalgia (an earlier diagnosis) or all 3. But I never experienced the side effects like moon face that you describe. It's all very confusing.
Good luck to you!
so sorry for your struggle. I am 82 was diagnosed with PMR at 78 after the same vaccine. I have tried various methods of taper and I have never been able to get below 5mg and in the last year I have been unable to stay below 8mg. My doc says that aging may reduce the amount of cortisol we need and the pred is necessary to keep in balance. I really don’t recognize any of the toxic symptoms at 8mg but I do have fatigue and some insomnia beginning at 7mg. I am in excellent health for my age otherwise surviving a heart attack 18 months ago and successfully rehabing to full pre-PMR activity. I guess my inly recommendation is to not try to taper too quickly. Most that I have heard about have problems there. If you find a level that seems tolerable linger a while. There is quality of life as well as quantity to consider. All God’s best.
Sounds as though, like you, I may be in for a long haul with PMR and prednisolone.At the start thought it would be taking the medication till I reduced and was off it and then I’d be back to the healthy 80 year old I was previously. I am still hoping !! You are doing well with rehabbing and activity. Long may it continue. So good luck.
Stick with the preds. Don't taper to the next level until you stop hurting. I had PMR, misdiagnosed for at least 6 years. It was eventually diagnosed when GCA kicked in just before my 60th.
I am tapering slowly. Just wondering whether I am being a wuss because I don’t have pain like it was before taking prednisolone. What I have is an ache in my arms and I recognize the muscles that are affected because they feel hard and they feel the cold. Is this sufficient to stay on the same dose for longer? Any thoughts? Also having minor surgery later this month - should I increase dosage in preparation for that. Grateful for input.
I had the Shingles vaccination a year ago (last August) and have now gone down with Shingles and really bad as it is across my body from the tummy button to the left and partly up the side and back. Very painful and have been on antiviral tablets and then antibiotic cream. I have had to stop taking Methotrexate for 4 weeks to try and recover. I am getting there and hope to restart it this week. All I can say is that the Shingles vaccine certainly didn’t stop me getting it.
This isn't a political forum, so I'll limit my response to this:
Human beings have a right to health care, and to a society that is invested in providing the same level of care to all of it's members, regardless of their age, sex, gender, orientation, race, creed or economic status. That includes access to sufficiently nutritious food, a clean place to live with adequate sanitation, potable water, and sufficient heating and cooling as is compatible with life.
Actually, how it doesn't.
I too have had similar problems. Shingles of the finger twice in the last two months. I also have had oral Lichen Planus but now have Lichen Sclerosus. I am 69 years old and have suffered with PMR since August 2012. I have had several flare ups but have managed to get down to 2.5 mg of preds a day. Have had swollen fingers, lost the use of one side of my body, I could go on forever. Was interested in your comments about the injection as this has been recommended to me. When reducing steroids it is hard to know what is your normal body aches and pains, and what is the result of going to low on your dose. Stress does pay a huge part in all of this.
I know stress brought on my Shingles as hubbie has been diagnosed with cancer for the third time so very stressful time at the moment.
I thought twice was bad enough - three times is really bad luck. All the best.
You can buy a pill cutter from the Pharmacy or ask them to order one for you. This will split the 1 mg Pred. Tablet into two exact doses of 0.05 mgs. It’s very useful to have . Mary
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